CW: My Mental Health Journey

WARNING. What you’re about to read is incredibly sensitive, and contains information about suicide, and trauma. If you’re feeling in need of help, please don’t continue reading this. Resources are available for anyone struggling with their mental health. If you feel you are in an emergency situation, please dial 999. And remember, my story does not ever negate what you might be going through or have been through.

What do I suffer from?

I suffer from depression, anxiety and possibly PTSD (although the latter has not been confirmed by a doctor, but everything started going downhill after my trauma). Having a combination of different mental health issues makes everything a lot more complicated, and even harder for me (particularly as a man) to talk about it. I grew up in a society which would have seen the issues I suffer from today as lazy, ungrateful and selfish. I also was constantly told I needed to ‘man up’ and ‘snap out of it’, particularly from other men. You’d probably find me silently crying most nights because of this.

Loneliness

Growing up in school, I had no friends for 10 years. No one I felt I could call my own close friend anyway. I didn’t really excel at anything in school. I used to wear glasses so I just had a lot of bullying for being the one the teachers liked, or the nerd in the class. Back then though, I didn’t understand much of why I was being targeted so I kept on doing my own thing. That would include going to a remote area of the school field to look at woodlice, and examine them in minute details. I would spend all my lunch break doing this. If I wasn’t doing that, I was either drawing maps, looking at maps, or planes, or sitting in a sensory room with disco balls, fibre optic lamps and bubble tubes.

Groups would be difficult. If the teacher didn’t pick the groups for us, I’d always be the one who came last, and even then, people wouldn’t want me to be with them. This started happening more often as the activities at school changed from theoretical study to practical work. And this still affects me today, evident when people I care about are going on a night out, or a pub crawl and I cannot join them because I will get a sensory overload from being there. As a result, I prefer theory to practical work, and so I’ve spent the last 6 years of uni improving my academic writing skills, to the point where I now have my first journal article published on MDPI.

During school, homosexuality was also not widely accepted, and the term ‘gay’ would be heard on the playground constantly. Multiple times I was manipulated by people at school, including when I was made to kiss another boy on the lips in the middle of the school field with everybody watching. Peer pressure didn’t occur to me back then and so I thought it was acceptable to do. But also because I had been ‘bribed’ for a free laptop if I did so. And since I like proving to people what I can do, I just did it. Only to then be ridiculed for the next 15 years. This pretty much kickstarted all the bullying I received in school.

The boys didn’t enjoy playing football with me in PE class. The teachers also didn’t understand why I reacted so strongly against their snarky and often out of line actions towards me. I mean, I don’t think you’d want to have a ball drop kicked at your butt as a form of initiation. So I stopped playing football, because of this. Instead, I wanted something I could do where I felt welcome, and the sense of competition not as prominent. This led me to taking up gymnastics classes. So I found something I could do at school, but I still had no friends.

The bullying continued. You can probably name different kinds and I would tell you I was a victim of it. I was beaten up, kicked in the face in front of teachers (who did nothing about it). One time I was picked up and thrown over a brick wall (which hurt badly), another time I was fully knocked out unconscious and found myself in a wheelchair when I woke up. The hostility in terms of verbal abuse was also huge, including a lot of ableism towards my autism, and what would today be very bad homophobia. The worst bullying incident was that of one of my ex partners, who worked with 2 other people to produce a hate website directly attacking me and my autism. This website is actually still up and running. My parents began to monitor my computer time as a response to all of this.

While this was all going on, I began to be recognised for my performing arts. At high school, I was a favourite of both the drama and music teachers, because they enjoyed my acting, and my piano playing. Acting was something I liked doing because it meant I could escape from real life for a while. I starred in pantomimes, and comedy productions usually as the villain. To this day I still have my piano and I still play it, learning new music each year, but I should probably play it a bit more. So in the end, I found that music, and gymnastics were my coping mechanisms at school. Towards the end of high school, kids grew jealous of my acting skills and refused once again to have me in their groups during drama classes, leading me to struggle, and achieve only a satisfactory grade at the end. I’ve lost confidence in acting, and don’t think I’ll be that good in theatre productions anymore.

Today there are days where I still feel like I’ll be alone. I have far more friends who are women on my Facebook than I do men. This is because it was men who bullied me, so I find it a lot harder to trust men. It was women who’d be offering me support after the bullying, and throughout much of my school and college life. I stopped retaliating as I reached college, and afterwards, the hostility died down, the insults dropped, and the people that didn’t like me, took a liking to me very slowly. Sadly, this wouldn’t last.

Shielding my ears

For those of you who might not know, I have a huge sensitivity to vehicle engine starting sounds. To the point where if a large engine is off, I will shield my ears until it starts up. Unfortunately this very aspect of my life led me to permanently end an 8 year friendship with someone who took a liking to me during science classes.

We will refer to him as my ex friend, because that’s where it stands and will always stand. Thankfully he isn’t in my life anymore and I am fine with that. But the damage he did still lives with me today. It was a lovely afternoon, and we had just had lunch at Wimpy. We decided to take a walk along the coast of Beachy Head to burn a few calories and get some fresh air. The problems started as soon as we arrived. Basically, I saw a white coach from a distance in the coach parking area. Naturally I shielded my ears, thinking I was going to be alright.

But then, this ex friend of mine grew incredibly angry and hostile. He started to argue that there was no one in the coach, and it wasn’t going to start and told me to stop being silly. Shocked at this, I defended myself saying it is a natural reaction when I see a coach or a bus. He eventually flew into a huge rage, stormed back to his car, and drove off with his friend, leaving me alone by the edge of these cliffs. It was not a fun experience at all. I felt betrayed, I felt hurt again, I felt like jumping off that cliff. In the end, I accepted he’d gone and made plans to walk the 30 or so miles back home, or find the nearest train station. Days later, he shamed me for my political views, and for my cosplaying (a hobby I took up during college).

Once again I felt abandoned, lost and alone. And this is why I now feel like I must ask any friend I meet who has a car, if they’re okay with me shielding my ears. It sounds silly, but this is the reality. I have had this sensitivity to engines for a very long time. It’s not something that just goes away. Autism doesn’t work like that. My brain is very sensitive to certain noises. It just happens that my sensitivities are incredibly specific and unique compared to other people.

This is the mild part of my story. If you’re sure you want to read on, please be prepared to read about suicide and trauma. Once again, help is there if you need it.

The Trauma

Sadly, because of this significant event, and because of my huge ability to remember a lot of dates of my own history, there’s no way I will ever be able to forget what happened on this particular day. So writing it down doesn’t bother me. February 28th 2013. Just after my 18th birthday. I had been walking home from army cadets (which was something I took up to increase my self discipline). I was walking along the main road when I felt the hairs on the back of my neck twitch, and I could sense I was being watched. I quickened my pace, and naturally, wanting to get home as quick as I could, turned down a dim lit road for a shortcut.

Looking round, I saw two figures, and as they came forward still, they were wearing balaclavas, and looked middle aged. Realising I might be about to be mugged, I stopped dead and watched as one of the men stood behind me to avoid any chance of me making a dash for it, and one in front. I remember the exact words in what felt like the end of the world for me. “Got any fags?” The man in front said, to which I replied no because I don’t smoke and never will. Suddenly, the man behind me made a quick grab for his pocket (my reflexes are fast so I zipped around) and pulled out a knife. Two seconds later, that knife was an inch away from my throat. He was holding me at knife point. Then came the words:

“Give me your money.”

I couldn’t move. I couldn’t bring myself to speak now. There was a knife just inches from my throat. I was being mugged. I was being held hostage by two men who didn’t give a damn about the world they lived in, they just wanted money, and they would be willing to use deadly force to get what they wanted. They wanted something from me. And they were not getting it, because upon turning my pockets out, they found nothing of use. I saw them sigh at this point, and then they realised I was of no use to them. They asked a final question to me: “Do you live nearby,” and I nodded to this.

A minute later, the knife was pulled away from my throat, and back into the man’s pocket. Both of them turned around, the direction by which they came, and finally disappeared around a corner. I was in shock by this point. I was in denial, and I was wondering if I had just woken up from perhaps the worst nightmare ever had during sleep.

The ordeal was far from over.

What followed next was a huge fear of going outside for a few weeks. I got home, locked everything, even my own bedroom and sat there in silence, finally accepting that I’d just be alone and wouldn’t have anyone around to help me. My mind started to go all over the place. I stopped all my activities I would enjoy doing, I stopped talking to people, I stopped looking after my hygiene, I refused to eat and drink for a while, and didn’t join in any family outings or anything they wanted to do. I felt as if some huge black cloud had taken hold of my brain and completely flushed out all the positive stuff I had experienced. Flashbacks of my bullying became frequent, I couldn’t sleep at nights, I ended up crying myself to sleep about 90% of the time.

I deteriorated, fast. A few months into the summer break, I started to contemplate killing myself. I was not sad, I was not happy, I was not anything at that point. I was empty, null. I felt like it wasn’t worth it anymore. That I was just a waste of space. These thoughts began to plague me for days, and they continued for months. One night, I was in the biggest mess, and after my mum asked me if I was really alright, (months of masking and trying to stay out of my family’s sight for fear of being turned down support) I finally confessed that I was feeling suicidal.

I was looking for the least non lethal, harmful way to just end my life, I told her.

Diagnosis

The next day, I was rushed to a GP with an appointment. After I confessed everything I was feeling, the doctor told my mum I was suffering from major depression. I was put on medication, and referred to cognitive behavioural therapy (which would take 6 months to actually get contacted after). Mum explained that I wasn’t changing clothes, or doing anything I once enjoyed doing. The doctor told her that this is a symptom of a mental imbalance. When you lose all joy in life, you begin to question what the point of it is.

I didn’t want gifts, I didn’t want anything my mum was generously offering me, I knew deep down she just wanted me to be happy. I’m so used to not getting anything as a child that I don’t expect anything now, to this day. Sure, I used to demand for basic things like a go on the family computer, or a snack after school. But I never expected to do anything with family that I enjoyed doing, such as a meal out at an Italian restaurant, or a trip to the Spinnaker Tower. In December 2013, I had an appointment at a mental health hospital, where I was finally given more guidance and a bit more support. In June 2014, I started the CBT, for 6 weeks. I found that it helped rid me of the suicidal thoughts, but not my low self esteem or confidence.

As well as depression, the doctor also explained I was suffering from anxiety. I was constantly asking for reassurance, for hugs, for anything I knew might even help just one bit. I worried about burdening everyone, and as a result, grew more depressed and isolated from things. CBT helped change that a little bit but it didn’t stop me from feeling worthless. Most days today I still do feel worthless, and I do have flashbacks every year which is why I need the most reassurance on notorious dates that are just too easy to remember.

Relapse

Having been okay for a few months since CBT, I stopped taking medication and tried to revert back to my life, and seeked friends to talk to. A few months later, I felt the same feelings I had before CBT again. This would happen a few times throughout the next few years, right up to my new life here in Stirling. In fact, by the end of first year, the relapse had gotten bad. I finally got to a point that I realised that I needed to get help again and phoned the university for such. Put back on the medication, and given some counselling sessions (which would take 6 months to get an appointment) I was again fighting with my own mind about my life.

My mental health today

Today I live with depression, and anxiety. I live with depression because I tend to feel empty and worthless most nights. And I live with anxiety because I’m seeking reassurance and appreciation from others. I don’t want to be alone again. But I fear that I may be. Because I struggle with socialising in person even today. And I often contemplate on isolating myself from people on very bad days. I still have to ask people if I can hug them, if they mind writing me something, if they want a picture with me, if they want to meet up, or if I can shield my ears if I am in their cars. I have been battling for years. I am a fighter. I endured bullying, abuse and hate crimes. I endured a trauma. I live to tell the tale. And I’m not going to give up.

One thing that has really allowed me to accept my mental health is the film Frozen. This is one of the reasons it is my favourite film of all time, as most people who know me, will know. Anna was and still is my favourite Disney and favourite fictional character. What she went through as a child resonated with me so much. While I wasn’t physically shut behind a closed door, I was often left out of everything I wished I could do. It’s only now that I have the strength to talk about it, and I hope I can see friends and do things like walks, hikes, sciencey stuff, environmental stuff, save the planet, put people first, help in any way I can. Tangled is another film, I resonated with the fact that being shut in a solitary space for ages meant that your social experiences would be less. To this day I struggle with slang, sarcasm, innuendos, metaphors and any other non literal language, including internet memes, dark humour, and references to films I have never seen.

I am, in fact, afraid of the dark, particularly if I am on my own. Some nights it is hard, so I make sure I carry my headphones on me if I am walking or taking public transport. Some days I look at myself and I still see a broken person, with a black cloud over my head, not as big as before, but significant enough that it stops me from feeling happy. I have a few insecurities I fight with, such as my crooked nose, and the fact my eyes are not perfectly aligned, a prominent wrinkle between the eyes that is easily noticeable in photos, and that I have a rounder, more babyish like face. I have a decent looking body due to my fitness, but I hope one day I’ll accept my face for what it is, and also try to take in more compliments from people. This is coming from someone who was called ugly for years. But I am working on bettering myself. That’s why I also have a positive journal I carry with me when I see people now.

I am trained as a Scottish Mental Health First Aider. But that doesn’t stop me from feeling empty sometimes or afraid of isolation or loneliness. I work out a lot, but it doesn’t change my difficult nights and the fact I’ve always, (for all my life) struggled to get good sleep. I am sure that will have had some impact on my muscle gains but it is what it is. I still do trampolining and gymnastics, I still do piano playing. I study a PhD which is intense but enjoyable. I have a life which I am grateful for, but which also still has its daily struggles. I am here, and that is what matters. I will never stop persevering.

Maybe I Am Too Hard On Myself

Stress. Pressure. Deadlines. Headaches. Four things which I have experienced in the last couple of days. I am only just recovering from the psychological effects of online abuse this week too. It is often easy for me to deal with abuse, given I was bullied for 15 years at school when I was younger. But something about this, felt different.

I’m very much inclined to come to the aid of a friend when they are feeling upset, pressured or targeted by other groups of people. But because I hate confrontation, I try to seek different routes for doing this. Sometimes it’s just an appreciation post on Facebook or tagging them in a Tweet. But then four hours later I was left feeling drained, worthless, and like a person with little value.

I am not used to being dogpiled online, which is why this particular attack ‘shocked’ my system. But I also felt guilty simply because I know that every bully’s intention is to seek a reaction (I know this from experience) so why did this particular event upset me so much?

The truth is, I am not the most up to date with the Twitter way of life, or indeed the Internet in general. Indeed, when I was younger I’d see comments saying: “This is the Internet, poppet”. This made absolutely zero sense to me, as in my mind it was something I already knew.

I often tend to feel like I am behind in social life. Behind in jokes, new trends, new fashions, new memes (I don’t really get them anyway) and other stuff. This makes it difficult for me to join in any conversations. I only discovered what the word ‘simp’ meant the other day when I saw a Brig article for it.

I am 25 years old. In most people’s minds (particularly people older than me) that’s young. To me, that’s inexperience, and slower learning curves with social media and social life as a whole. Stuff that I feel like I should have learned as a teen.

When something new to me such as ‘dogpiling’ happens, I am unprepared because I know nothing about it. And I think that’s why I felt so affected by this.

To that end, I did try to use this situation to suggest maybe my Labour Party society, or other societies could inform and spread some sort of awareness about how to deal with this sort of abuse online. But at the same time, I feel that it is my responsibility to educate myself on this as well, rather than simply relying on others.

I find myself constantly telling myself that I should be aware of what’s going on around me. The other day I was walking to try and clear my head. Almost suddenly (without any reason at all) I turned my head 180 degrees, and saw two cyclists riding towards me fast. I hadn’t even heard them, but I felt like there was someone behind me.

I quickly shifted to the side, of course.

I heard them say: “thank you pal” before I could turn around again to continue walking. Great, so I just received a polite reaction. But in my mind, I didn’t see them coming in the first place, so why didn’t I turn around sooner? That situation is impossible for me to have changed because I couldn’t sense them coming.

Fast forward to the end of this week. I had a mental health mentor session on Friday. She asked how I was doing with my work, and myself. I told her everything, how I felt lonely, anxious but able to keep up on my high workload and work to deadlines. At first she suggested maybe there’s something missing that could be preventing me from experiencing happiness.

But as I went on to tell her I had studied for many hours (longer than necessary) due to tight deadlines and found myself becoming isolated from my social life because of a disconnect between my academic level and the ability to talk to people about my work, the assessment then changed.

At the end of the session, she summarised her assessment, suggesting that I was being way too hard on myself because I was doing well, working on target to meet my deadlines, and have family and a small group of close friends to talk to. At first, I thought she wasn’t being serious and so I asked if there’s any resources online that could help me out.

But then the session was over, and we said goodbye (on the phone by the way). I pondered the thought over and over. I went to one of my group chats that Kalum was on to tell him what had happened. The result was that he was in agreement with my mentor.

Friends have been noticing something I haven’t, for ages.

The kicker was later that day, when I saw a Brig article about what success is and what success isn’t. Suddenly, a pattern formed in my head. Friends telling me I am hard on myself. Followed by a mental health mentor. Followed by articles that suggested success isn’t just one thing to work majorly hard towards.

After that, I thought about my online attack again. And I realised something.

I had been defending myself against people I didn’t even know. People who just wanted a reaction. I had allowed myself to ponder their thoughts and feelings towards me as if a ‘voice’ in my head was saying I am not good enough because I couldn’t satisfy them. This is a psychological effect which I also experienced when I was younger.

Being abused, being bullied (physically and verbally) makes you more concerned about people’s painful experiences. But it also made me incredibly self critical. I just didn’t think that people actually valued me much, or my opinions because if they did, I wouldn’t have been attacked.

In this way, maybe this effect sort of manifested itself.

I don’t know how to stop this from happening. I don’t know how to stop being hard on myself because others were hard on me.

I just want to succeed at what I am currently doing. That is, finishing my PhD work to a high standard, and then going from there. Friends tell me to take breaks, but this is often difficult especially when I am at home, and feel an even bigger disconnect.

I seriously think we need mental health advisers at University who are trained in understanding social isolation at postgraduate level. That’s one reason I campaigned to become Postgraduate Officer. We’ve been let down far too long and the University’s actions on mental health have had a negative impact on the student community.

But we need people who understand when we have large disconnects. It could be that one has a bad supervisor relationship, or that they experience isolation like me if they don’t feel like they can talk about science at a level they can understand. This is why I joined Brig.

I wish more could be done about this.

But at the same time, I wish my own self critical mind would somehow stop acting like I’m going to keep being attacked and shamed.

And with that, I conclude this writing. The manifestation of many psychological effects I’ve been going through during lockdown.

WORLD AUTISM AWARENESS WEEK – Autism, Mental Health and Social Pressures

MENTAL HEALTH AND SOCIAL PRESSURES

A topic which often doesn’t get discussed as it should. The mental health of students at University is important. The pressure of having to pay rent for accommodation, food/drink, bills, and still keep on top of all your studies, can be challenging at first. On top of that, everyone wants to have a social life at University, and do things they find fun and enticing. But on top of that comes peer pressure from others to join them, maybe for a drink. But then that drink might result in more peer pressure to come for a night out. You get anxious because you don’t want to let your friends down, but you also feel pressured by them to come out. Sound familiar to you? This is how social pressures can affect our mental health and wellbeing. These pressures may be felt more by autistic students than by other students.

So, why autism and mental health? They’re separate, right?

Autism is neurological. In other words, it is the way our brains work and view this world. Our brains are wired a bit differently to other brains. There are thoughts coming and going constantly. You are always thinking of one thing, then another. Sometimes just thinking too much can cause us to get stressed and anxious. Things like: “What do I have to do today?” Oh, I really don’t want to let you down, but I have to finish this work” or “I hope people actually like me just because I don’t really talk in person much”. The feeling of being viewed as different or feeling like you don’t belong has been and is a great contributor to higher suicide rates in autistic people. These feelings are an accessory to us being autistic. So absolutely, autism and mental health do exist together and we need to talk more about it.

I don’t know about you, but for me it is very common for me to be mad at myself if I make a mistake, or commit a wrongdoing. I have had people tell me that I am very hard on myself. I was brought up in a tough love household, and often shielded my feelings from others. Looking back, I wish I was more open about how I was feeling but at that time I was more focused on trying to get the last coloured toy car in the exact order I wanted it, or drawing my 347th road map from memory (yes these are things I did). I was able to occupy myself as a kid a lot more. I didn’t have the social and peer pressures that I began to experience as I grew into an adult.

What are some of the pressures you have experienced growing up?

It started at school really. There were always these truth or dare games played on the field, and there’d always be a bribe of money as an award. So someone would say: “If you do x, you will get x in this amount of money”. But after seeing just how ridiculous some of these dares were, I kept my distance. I wasn’t very popular in school. I did not like to take risks. But when I did crack, it was at the expense of myself rather than everyone else. Going into college and university, nothing changed much, except I became more aware of what other students enjoyed doing. And almost all the time, it was going out for a drink, a party, or a night out.

Now I’m in the second year of my PhD, and I don’t really have many close friends in my cohort. Most of my friends have come from doing other things at university, or from some of the views I hold. I lived with the pressure of getting drunk, and doing drugs in my undergraduate years because I associated with some of the wrong people, often outside of university. Now this isn’t the case. I experience the social pressures of being a student: people invite you out to parties, but you find socialising and social environments exhausting after a while. Or people invite you to drinks after work ends, but you just don’t enjoy it. On the other hand, being a PhD student, there is no telling you just how lonely you can feel some days, even though you do have people around you.

How does the university culture affect you when it comes to social events?

I’ve been a university student for 6 years now, going on 7. That’s four years of undergraduate study, 1 year of masters, and I’m in the middle of second year of my PhD here at Stirling. I found that integrating myself within the student community was easier than I thought, but I found clubs and societies difficult to engage with. In fact, because I commuted for the first 4 years I wasn’t a member of any club or society at my previous university. Here, because I have worked with the Union on issues I’m passionate about, I feel that has helped me to have a sense of belonging, and so I probably feel more welcome here than I did 6 years ago. All this doesn’t negate the fact that socialising is still difficult and exhausting, and that now I have those social pressures set by a drinking and nightlife culture here in Stirling.

Do you think you’ll keep the friends you make here?

The friends I have made so far are brilliant, and I love just how accepting they are. Getting to know people here, I do find that despite there being social pressures, there is no obligation to join in if you don’t want to. This is a very reassuring aspect of university life. I am used to watching films which talk about the fraternities that go on in America, and elsewhere. I am not about that life, personally but I don’t shame anyone who is, either. So I hope I keep all the friends I have made here, especially ones who have a mutual understanding of who I am. So even if I am hard at work on my papers, I can rest comfortable knowing I’ve got that support there if I need it.

What about loneliness? Can you talk about it?

I remember being lonely for ten years as a kid. But back then, I wasn’t really bothered much. I more just didn’t understand why people thought so ill of me at the time, and continued doing as I was always doing. Growing up though, I became independent from my family and started to fend for myself. I have had a few relationships, and some really long friendships which did not last before I came here to university. The feelings I get most nights is that I’m not able to join in with other students doing those nights out, or drinking socials. And the workload you get at PhD level is enormous. It doesn’t feel like it, because you might spot me walking through the Atrium most days on campus, but it is. That is to make sure I’m not doing too much at once.

But I’m also feeling like this because, well people would tell me “Sonny, as you grow up you’ll find someone. It could be at university, so just keep being yourself” So I’ve stuck by that as best as I can. Being me, means no clubbing, nights out or anything too socially exhausting. But yes to studying, writing, and doing things I enjoy. I think sometimes if we tell people something is going to happen in the future, you develop some sort of social expectation that it will happen. And if it doesn’t happen in a few years, then you start to question when it will. It leads to me feeling alone. I do wonder if other people have had similar thoughts.

Are you happy with your life at current?

This is a big question. It’s hard to say for sure without being brutally honest, as most people with autism are. My mental health is on and off, but I am working on it as best as I can. I will sometimes have the odd one or two drinks, but this is now probably once a month or two. I don’t let the pressures I experience control my university life, and I don’t cave in as easy as I used to. I am definitely happy with my study and how that is going. So to me that’s what matters the most. And I am grateful to the friends I have here and support I’ve received here.

WORLD AUTISM AWARENESS WEEK – Autism, Sexual Health and Education

SEXUAL HEALTH

This is a topic which I don’t feel is discussed enough, and that is sexual health. Thanks to the Stirling Sexual Health and Education Society here on campus, topics such as this have been able to be discussed. However I want to talk about autism and sexual health, because there are a few misconceptions that need to be cleared up about us. And plus, I just like writing about how my condition affects different aspects of my life. So I thought I’d write about this one, today. It is day 3 of World Autism Awareness Week 2020. I hope you’re having a good week. Let’s get stuck in.

First the myths

Okay so I mentioned that there were a few myths surrounding this topic:

Myth 1 – Autistic people are incapable of love: This is of course false. I mean it goes back to what people say about autistic people that show no emotion or empathy. It just isn’t the case. And by being capable of love, I mean romantic and sexual love. Some of the empathy and feelings we do show would probably actually carry pretty well in a sexual relationship.

Myth 2 – We are sexless people: Just because sex can be a confusing topic for some of us, doesn’t mean we don’t have sex lives. We do. Violet Fenn put this myth to bed brilliantly with this Guardian article. It effortlessly explains how communication and sensory issues can mean we may struggle with our partners.

As the article explains, these myths can have negative consequences.

I personally don’t have a massive sex life. But I think that’s because I am currently just focusing on other aspects of life such as my study. It doesn’t mean I won’t have more of a sex life later, though. I just find the subject a little bit challenging to talk about. It shouldn’t really be taboo to talk about bodily autonomy. But I am not sexless.

Sexual health – my perspective

I guess I could start by saying, I am healthy. I don’t have any issues with my sexual organs or anything like that. What I found was I had pretty bad sex education at school growing up. We probably had one practical demonstration of how to put on a condom and also shown what a femidom is, which is the only reason I know about condoms and femidoms. Other than that we weren’t taught about anything to do with consent, contraception, and looking after your sexual health. So I pretty much had to go into this blind. I avoided any discussion on it taking place in school or college amongst my peers.

I know that most importantly, consent is absolutely essential.

I even watch the tea analogy video on consent, because it’s that important.

I don’t get why people find it difficult. I mean, I find it easy to follow rules. To me this is a rule, and a law. And I also respect people regardless of their gender.

I’m also open to talking about subjects that don’t get discussed – and sex is one of them. As a male, it is important for me to look after my sexual health. And again, I haven’t had much education on it, but I’ve seen that it’s not just me. And it can be hard to try and “fit in” without having some sort of awareness. Again I think Violet put this brilliantly.

Also I do feel like that there is some sort of belief we are sexless because of who we are. Before I went to comprehensive school, I was at a school which specialised in people with additional support needs such as myself. It led to people thinking I would be too immature to discuss subjects such as this. Because I would spend ages playing with train sets, or drawing pictures of maps even as I started growing up, I imagine people probably thought I wouldn’t be mature enough to talk about topics such as sex, independence, and mental health. But now I find that these topics are more important than ever.

Especially sex. I may not have had a proper sexual relationship, but I do know where my boundaries are and for me, being comfortable is key to building up trust. If having safe comfortable sex, then communication would be absolutely key. I’d need to make sure I don’t get distracted. And I would need to be comforted, and have that physical intimacy and affection.

And it’s not just this I want to discuss. There are autistic people who don’t find themselves attracted to someone of the opposite sex. And that’s okay. Attractiveness should not be based on societal norms but on your own personal lives. And this isn’t a political view of mine either. This is something I learnt whilst growing up in school and having both guys and girls attracted to me.

And finally I want to talk about some struggles I have with the topic of sex.

So for me, I find any sort of joke or innuendo made sexual incredibly challenging to understand. It can even cause me to make people laugh hard, but not myself. With that comes a feeling of embarrassment or anxiety. And this anxiety was made clear last year when I was taken into a sex shop and had absolutely zero clue what anything was. Other than maybe ropes used in bondage. I had to be educated right there, on the spot about what it all was. And I felt embarrassed and rather sad about it.

Now I do know a little bit more thanks to the SSHES society here on campus, and hopefully I will be able to build upon that knowledge. I might not get any of the jokes, but I think that is okay, as long as I get something out of each and every conversation.

In summary, I want to be a respectable partner in the future, whilst making sure I look after my own sexual health. I think that is what will likely make me happy.

WORLD AUTISM AWARENESS WEEK – Autism, Teaching and Education

It’s day two of World Autism Awareness Week 2020, and we’ve kicked things off with the sport side of things. But now we are moving on to another important aspect of university life, and that is the teaching and education aspect. There will be two parts to this article. In some sections, there will be more of a focus on teaching at the school and college level and then some light shed on the University environment. This article will include reports given from autistic students at a working group meeting, as well as information given by The Stirling Teaching and Education Society.

TEACHING AND EDUCATION

Intelligence

Do you remember your days at school and college? I sure do. I want to kill one of the myths about autism here and that is related to intelligence. Again experiences here are going to be different from mine. At high school especially, I was put into the top sets of maths, English and science. This was based on my grades I’d gotten previously. Students at the working group meeting reported that teachers often had a misunderstanding of their intelligence. Indeed it was often the case that teachers based their top, middle and bottom classes off of the grades they got. But what they didn’t factor in was how intelligent some of their students actually were. And this showed when students were placed in exams with lower difficulty. Some people who actually performed well at a subject were still placed in a Foundation Tier exam, rather than a Higher tier, despite the fact they were capable of performing at the Higher tier. This meant grades were affected, and thus progression to the next year. I was put on a Foundation tier exam for Geography, but I was actually capable of much more. My grade for Geography coursework was an A. My grade for exams were on the top end of the Foundation Tier. In this tier, you are limited to what grade you can actually get, with a grade C being the highest. So I only graduated high school with a grade C in Geography.

The fact of the matter is that intelligence is measured in many different ways. Grades are set by the school examination boards for progression, but they’re not the best measure of how intelligent a student with autism is. I happen to have an incredibly good memory, which gives me a bit of an edge when revising for exams. However, due to my difficulty in working in groups, or speaking out loud, I was often viewed as less intelligent, rather than actually being given proper support on how to address my difficulties. I am sure other students with autism will have a much different story. Some students focus more on technical details, and others focus on the bigger picture. Teachers should be able to adapt to us as individuals, in order to best support us. And the curriculum needs to allow for alternative arrangements when it comes to assessments.

At University, the situation is different. In fact, last year we released a World Autism Awareness Week video which demonstrates this. Picture yourself sitting in a lecture, and the lecturer is asking his class if there are any questions. There is silence for a couple of seconds. And then the lecturer implies that there is no such thing as a stupid question. The autistic student is a bit anxious about asking a question in front of the class, so instead waits until the end of the lecture to ask. But then the lecturer turns around and says that there was time to ask questions earlier when the whole class was in the lecture theatre. This is a problem. You see, autistic students do get anxious about asking a question in front of the class. I don’t know about you, but if you put me in that situation and there was something I didn’t know, I’d either be worried about how people would be perceiving me at that point, or if the lecturer actually does think the question is stupid but does not say it. Asking questions should be seen as being intelligent.

Video released for World Autism Awareness Week 2019 about autism and university life

Disruption

In school, it did not necessarily matter what class you were in. There would always be one or two students causing disruption for the whole class. So much so that it wasted time for everybody. The way the teachers would address this disruption in school (at least for my school) was that they would make everyone stay behind as a punishment based on the actions of a few. There was no individual address for the disruptive students, but everybody was impacted. It was a completely negative response to a negative situation, which led to me becoming anxious about my studies. Why? Well if this was to continue on and for days on end we’d be made to stay behind, then 1) I wouldn’t get much of a break, and 2) I would start to fall behind on studies because the teacher would be too busy trying to address the disruption rather than help all of us progress. Students at the working group meeting reported similar stories relating to disruption of teaching.

And disruption doesn’t just include other students being difficult. It is also other factors. Perhaps I was sitting by a window and the sunlight was just too much. Or maybe I was nearer the door to the classroom and could hear outside noises there. Whatever it was, it made it much more difficult to study and thus, progress. Disruptions have to be addressed properly. But they also have to account for everybody. Because everyone with autism has their own sensory profile, they might be more sensitive to one thing than the other. So you could get 4 different students in class, in which one prefers the blind up, one prefers blinds down, one prefers the door closed, and one with the door open. How do you address that? You could position the students according to this. I prefer the blinds down and door closed, so if one preferred the blinds up and door open, then I could be positioned further away from both the window and door so that the least amount of sunlight and background noise distracts my attention.

But as you can probably imagine, it’s not as easy as that. It gets far more complicated when you have to factor in noise at the front of the room, such as the voices of other students talking. I am very sensitive to sound so I can hear other people talking very easily. But then I also had the problem of being short sighted. I was wearing glasses because I struggled to see the whiteboard from the back of the room. Sounds such as the humming of an overhead projector or the ticking of a clock and dripping of a tap also made things a lot more difficult.

At University, disruptions are frequent in lecture theatres. A lecture theatre is a large space. Large rooms reverberate noise easier. Which means if a phone goes off in a lecture, it’s heard from across the other side of the room. And it gets worse if someone were to shout into a microphone to be quiet. This would be a sudden, loud noise that could take me by surprise. It is highly recommended that lecturers and other students do not do this. The same situation would also apply to me as it did in school. Where is the best place for me to sit? It can’t be next to someone who’s talking to their classmate. It can’t be by an open window or door. It could be at the front, but what happens if someone speaks too loudly into the microphone? Sensory overload. So it’s actually stressful just choosing where to sit in a lecture theatre to ensure the least amount of disruption possible. I hope that lecturers can somewhat take something from this.

Random selection and teacher’s pet

Random selection refers to when a teacher decides to randomly pick on you to answer a question they’ve asked. This might also happen while someone who actually knows puts their hand up, hoping they will be picked. If it was a subject I was confident in, that person would be me. But in other classes, the opposite happened. Due to people talking next to me, the teachers mistook me for being disruptive and would then put me right on the spot to answer a question, and then scold me afterwards if I didn’t know. Please don’t do this. It is one of the easiest ways to cause me a whole load of anxiety and distress. Likewise, students at the working group meeting reported that they hated being randomly selected in classes they weren’t so confident in.

Teacher’s pet refers to being one of the teachers favourite students. For me, this was in French. I had the teacher tell me that if I were older, he’d buy me a burger because he was super impressed with how I participated in class. The music teachers loved me, as did the drama teachers. However, there were also incidences in which I often felt like I was excluded from classes, due to this exact same scenario. Someone else was seen as a ‘favourite’. So while I did enjoy the praise I got from teachers, I didn’t necessarily like being a favourite. There should not really be favouritism in any class in my opinion. And sometimes teachers took advantage of this ‘teacher’s pet’ scenario by selecting me to answer the questions, once again putting me on the spot. Another difficult situation.

Bonding

This section takes information from my first article for the week – Autism and Sport. Because the same applies. A teacher should genuinely be establishing an individual bond with an autistic student, and getting to know their needs. This makes it much more easier to engage in classes, be it in sport, or in education. Discussions with the Teaching and Education Society revealed that some teachers do not often take the time to establish these bonds. This could be due to other factors, such as the workload they have been given, or the size of the class itself. It was common for my schools to have at least 30 students to a class. Student teachers explained that this put a ton of pressure on them each and every day.

In University, the situation is slightly different. Due to a much larger class size for a lecture (often some lectures include 2 or more units) it’s much harder for a student and a lecturer to establish a bond. Usually students have to resort to emailing their lecturers just to be able to get their input on things, especially when it comes to their own difficulties. Thankfully I was able to do this in undergraduate years, but it was not easy. Thankfully the introduction of an automatic ARUAA system at the University of Stirling should theoretically make this easier, if the lecturers are updated with information on a student’s additional needs. And this applies to autistic students studying at the University.

Sudden changes

In school and college it was common for students to receive a timetable of their studies. For me this made things relatively easy when it came to establishing a routine. Having a structured plan allowed me to make sure I knew where I was going, and what I was doing. Whether or not I needed to bring a P.E kit because I had a P.E lesson that day. Or maybe I needed to bring food ingredients for a food technology practical. But there were so many sudden changes that I just do not think I can put it all down in words. Instead I am going to list some of the sudden changes that would cause disruption to my routine and thus, anxiety and distress. The list is as follows:

• Sudden ringing of a fire alarm, and evacuation of buildings
• Sudden changes in classroom availability for the class
• Sudden changes in outdoor activities due to weather
• Sudden changes in break and lunch times
• Sudden changes in class finish and start times
• Sudden changes in teaching assistance (substitute teachers)
• Sudden changes in my health and wellbeing (getting sick at school)
• Sudden loud noises such as tractors cutting the school field
• Inset days, school closures given with very short notice

And students from the working group meeting also reported similar stories that caused disruption to their routine.

At University, the situation is different. I was given an online timetable for lectures and workshops only. Everything else was based on independent study and other commitments. This was a bit different for me, as I was so used to establishing a routine that had me up in the morning and an early night. Thankfully, I do have mentoring to help with time management and organisation skills but I know that autistic students sometimes do struggle with this, and it would be good for Support Services at the University to take this into account.

The learning environment

The final section of this article is focused on the learning environment. In University, there are study spaces such as the library, and separate computer rooms in University buildings for any student to study at. But I often struggle with large crowds and noise, so I am limited to where I can study if I don’t want to be in my office all of the time. I like to get out and about. Or I can study from home, which is what I am doing during the current COVID-19 crisis. There are also places which do help my health and wellbeing such as the Wellbeing Space within the library. I think it is important that student teachers and lecturers take this into account. But the classroom environment also has to be fun, and engaging. I think that colours and good signposting is key to this. Making sure we know where things are, and that there aren’t any dull, dark places. It should be a cosy learning environment where nothing is too over the top, or too little. But enough so that we can make a little more sense of where we are.

Thanks goes to

University of Stirling Teaching and Education Society – for the informative discussions that took place leading up to World Autism Awareness Week 2020. I also hope that the information contained in this article may be additional or perhaps new information for you and others to read about.

WORLD AUTISM AWARENESS WEEK – Autism and Sport

Weightlifting in the University of Stirling Sports Centre

Happy World Autism Awareness Week 2020!

COVID-19 has taken our plans for this year out of the window, so instead I am going to be releasing 1-2 articles a day about how different aspects of university life impact people with autism such as myself. I sincerely hope you enjoy reading these. The articles will be available to view after the week, too and I encourage you to share these articles with your friends and help spread more autism awareness.

Why Autism and Sport?

The University of Stirling was crowned Sports University of the Year in 2019. It is a world renown university for sports, with access to world class facilities. The University is also currently near the finishing phase of the new Sports Centre, set to open in the summer. It is therefore in my mind, essential that the topic of sport is taken from the perspective of students with autism, here at the University, and also to any individual with autism. So without further ado, here is the first article for World Autism Awareness Week 2020.

AUTISM AND SPORT

Individual Sport

In 2019, I organised a working group and gathered the opinions of other students with autism, as well as staff. Individual sport was one of the key points that was brought to my attention, and rightly so. Since autism is a social communication disorder, most people with autism have difficulty working in groups, or as a team. The students in the working group meeting reported that they find individual sports easier to access, and easier to partake in. Such sports include swimming, weightlifting and rowing. This is different from team sports such as football, rugby and hockey. It is important to note that even though sports such as swimming have team competitions, in this case it is referred to as being individually partaken in and for recreation. As someone who lifts weights in the gym, there is no pressure from others for me to do anything out of my comfort zone. I have direct control over what I am doing, and I can therefore establish a suitable routine which I would stick to. An individual sport is good in this regard. Since some people with autism favour direct control and routine, it becomes more enjoyable and satisfying.

When it comes to team sports, I always had difficulty when coaches or P.E teachers would tell me to get into a group. Instead I would prefer if they put me into a group, and informed the group that I would be joining with them. But we have to look at a misconception which is that autistic people can’t do team sport. That’s a myth. I was in a mixed disability football league when I lived in West Sussex, and I am currently recovering from a trampoline injury. So even though some autistic people prefer individual sports, it doesn’t mean they can’t partake in team sports. This quote is echoed by a coordinator of the Active for Autism programme at the National Autistic Society. What is important is that coaches adapt, because every autistic individual is different, meaning what works for one person, might not work for another. Adharanand Finn published an informative article in the Guardian about the importance of communication while coaching a sport. How this is implemented within a University environment is extremely important.

For me I have found that repetition works. If a coach keeps me practicing the same trampoline trick, eventually I find that I can do it, and can pick it up quickly. So coaching me in any sport might, for example consist of getting me started on one specific routine or trick, for as long as it takes until I am comfortable enough to practice for a competition. Of course, those partaking in sport don’t have to do it for competition, but also for fun. And I think, the best way to make a sport fun for someone with autism is to build a good foundation of trust, and set more realistic goals and targets. Don’t make it about winning or losing. A sense of community, and being part of a team is what makes sport accessible to me and building healthy relationships and a good skill set is a positive from partaking in a team sport. But above all, communicate with us.

Hazing and initiations

Every University Sports Club includes a social event or two in their calendar. However, not much has been done to improve the accessibility of these events to people like me. Indeed, I have been subject to hazing, which led me away from football at school. University culture is of course supposed to be fun and varied. But when it starts to cause unnecessary harm to other students, something needs to be done. The initiation of a club at University is often the very thing that prevents students with autism from joining. Examples of initiations which could be difficult include:

• Being forced to consume alcohol, or partake in a drinking game
• Performing abnormal tasks which can cause harm – e.g. eating upside down
• Being asked to shout or say words or phrases to random strangers
• Being asked to perform public stunts/actions, for which one may not be comfortable

Thanks to the majority of Student Unions across the country, the issue of hazing and initiations is being addressed, some Unions including Stirling have now passed an initiations policy, which is a step in the right direction. However, whether or not the accessibility of social events to autistic students improves is a whole other matter. The concern is that students who do not wish to consume alcohol may be excluded from social activities. Anxiety and distress is very common. Instead the focus should be on having a fun, inclusive event. I have suggested in previous articles about the addition of non-drinking socials. I cannot stress it enough. They have allowed me to have a very good time with the Trampolining and Gymnastics Club.

Performing a handstand in the Sports Hall during training

Coaching and instructing

Disability inclusion training is important for the benefit of the autistic student, and the coach. Sometimes it is also important to tailor each coaching session to the individual, because this allows them to learn in a much more inclusive environment. Students at the working group meeting reported that coaches might give vague instructions, without properly demonstrating how or explaining why. This ties back into team sports mentioned at the beginning of this article. How a coach comes across to the autistic individual is incredibly important. I struggle to understand facial expressions, or body language. Demonstrating would have to be done with an explanation as to why you are doing it and how you are doing it. Sometimes online instruction videos give text only instructions and a video. This might be ideal for some, but not for myself.

Showing your working is something a teacher asks a student to do in order to gain more marks in an exam. The same applies here. It is much easier for me to understand a trampoline trick if I am shown it, and taken through it step by step. This outcome is preferable and can prove beneficial to both the coach and the student. Also, to help decrease anxiety afterwards, it is awesome to receive praise, especially if it is not something I have done before. When I learnt how to back drop and front drop on the trampoline, it was the praise I received that motivated me to progress towards doing back drop half twists. Receiving praise shows that you did something worthy that the coach and other members of a club can show appreciation for.

Sporting stereotypes

Picture a school in the United States. In the canteen there is a group of jockeys, a group of cheerleaders, and a group of American football players. They are amongst some of the most popular groups of students in the school or college. Popularity then is a huge sporting stereotype, and it can result in difficulties for autistic students. The stereotype says that you should be really good at a particular sport if you are popular and sociable. Popular means being able to have a good reputation amongst a large community, and it also means being able to effectively communicate. Sociable means people talking to you, starting conversations and expecting you to socialise back. Now we are entering red territory.

An autistic individual does not have to be good at a particular sport. An autistic individual does not need to be popular in order to partake in or be good at any sport. And an autistic individual does not have to be sociable to be good at a particular sport.

Repeat that out loud.

These stereotypes are having a negative impact on accessibility for disabled students in sport as a whole, not just autistic students. Nobody won an Olympic gold medal for being the most popular athlete in the team. If that were the case, a breakthrough athlete would not have achieved anything. Elitist stereotypes like this need to be challenged in all sports clubs. A pro-elite athlete probably spends more time training than socialising, anyway. If it were me, my mind would be on training and brushing up on skills. Kill this idea that sport is a popularity contest.

Sportsmanship

Students at the working group meeting reported that there exists a huge lack of sportsmanship towards autistic individuals. This is also something I experienced when I was in the mixed disability football league. It is not something I experience with the welcoming nature of the Trampoline and Gymnastics Club here at the University. I was a goalkeeper for my team during the football league, and I was also a goalkeeper for a school team for a short while. Unfortunately, other players on the field lacked good sportsmanship. The end result was that I was bullied off the pitch and scolded for letting in goals which were impossible to save, or for having a goal kick intercepted, thus losing possession. The team did not offer any advice, or tips to improve but were more focused on only having their best players on the pitch and showing arrogant attitudes.

Teaching sportsmanship shouldn’t be a difficult task. Working as a team is seen as a good skill for any CV. So why is it that some teams can still be really difficult? An autistic individual might approach the sport with a different mindset, but the rules of the sport do not change, and everybody is working towards a common goal. It is important to note that this section is concerned with sportsmanship at University, i.e. sportsmanship which has already been developed. There are plenty of articles about teaching children to be a good sport. But once again, I feel that the gap in knowledge for autistic adults needs to be filled, too. Some simple suggestions.

• Don’t treat us as if we’re different.
• Some of us might not like being touched/hugged. In that case, if they achieve something for the team, make sure you don’t hug or give a pat on the back. Simple praise is good enough.
• Make sure you’re directly communicating to us. Direct language is much more helpful.
• Pulling shirts could be a sensory nightmare, please don’t do it.
• If we make a mistake, or do something wrong, tell us, and suggest improvements.

It is of course okay to lose games or draw games, as well as win games. Sometimes I think it is important that we learn how to lose, so that we can take loss as just one step towards a win.

Sporting programmes

The perfect ending to a structured article. A section about good structured programmes. Yes, autistic students at the meeting reported that some sports programmes are not always suitable. Whether that be because of the environment they are undertaken in, or a simple lack of consistency. I personally like consistency. I always want to have a workout programme which allows me to stay consistent and progress. In a University environment, a student with autism has got the pressures of other commitments. These include studying, possibly working a part time job, deadlines, general home living, and social life. Any programme which does not take this into account could prove to be challenging. For instance, if a workout programme had me in the gym for 6 days a week in the evening, plus cardio sessions in the mornings, I would simply be too exhausted.

The National Autistic Society has a brilliant page with advice on how to make a sport activity more suitable for a person with autism. Just like coaching, each programme should ideally be suited to the individual, as everybody with autism is different. A programme which is consistent, without huge major changes (such as a change in day for a specific task) is going to be much more suitable than a programme that is constantly changing, and not accounting for other commitments. The programme should also allow for versatility. If I do not want to perform a task in a loud noisy environment for instance, there should be a way to make sure I can perform that task in a quieter environment instead.

To finish

I hope that this article gave you some informative information about how to help make sport more accessible for students with autism. I wanted to make sure I filled in the gap between information aimed at parents with autistic children, and autistic adults. This article will be available to share on social media. Thank you for reading, and happy World Autism Awareness Week 2020!

Coronavirus – An Autistic Perspective

Coronavirus has been hitting the news headlines for the past month here in the UK. Coronavirus or COVID-19. It is believed to have started in a Chinese seafood market located in Wuhan, in eastern China. Although studies also show that the coronavirus in bats and pangolins also has close resemblance to the COVID-19 strain. Andersen et al., (2020) documented that the coronavirus found in a Rhinolophus affinis bat had approximately 96% resemblance to the novel COVID-19. However, since its spike diverges in the receptor binding domain (RBD), it may not bind well to human Angiotensin converting enzyme 2 (ACE2). Basically what I’m saying is that COVID-19 is a new pathogen which resembles animal coronaviruses but not completely.

The COVID-19 virus eventually spread from Wuhan, across to Europe, including the UK, and over the pond to the USA. It is currently dominating the media in both countries, and the World Health Organisation has declared it to be a pandemic. Over the last weeks, almost every mass event in the UK has been cancelled. In my university, all classes have been cancelled and moved online, as well as examinations and coursework. However, PhD work continues on as normal, given access to the university itself will not be further affected by COVID-19. As it currently stands, the situation is developing every single day, so I have requested remote study from home, by installing a VPN to my personal laptop in order to access my PhD content.

But what I want to talk about in this article is the autistic perspective behind all this. After all, there’s a reason I am writing on this blog about it. Since news headlines dominate across the Internet, I thought about writing about how this might be affecting people with autism. Point to note is that this is my written experience of the situation, and does not necessarily reflect that of another person with autism. Everyone is different. So with what I say here, it is important that this is noted as a personal experience. That being said, I am sure people with autism will be able to relate. So here goes.

My routine

As most people with autism will tell you, they like sticking to a routine. And anything that disrupts that routine causes distress, anxiety. For me personally, it is now a normal routine for me to head to my PhD office for 7 hours a day, 4 days a week and I have found that being consistent with this has worked. Now with the possibility of remote working due to the COVID-19 pandemic, this means this routine is met with disruption. Am I distressed? Yes. Am I a bit anxious? Yes. However, I’ve not really mentioned that in person, because the last thing I want is to talk about personal problems when this pandemic is literally having an affect on every single person in the UK. But we do have World Autism Awareness Week coming up, starting 30th March so I figured that this is a chance to raise awareness. People with autism like routine. Some of us like to be organised. I like to have my work up on the computer, alongside my university email account, my Facebook and sometimes I’ll watch a video or two when a long process is taking place, such as data acquisition.

Distractions

In the PhD office, there are no distractions. My colleagues will work with their headphones on. There is never any noise coming from them. The window blinds are shut for my comfort so that sunlight that wants to penetrate through does not make my forehead go into overdrive mode. Literally having a direct blast of sunshine suddenly kiss your face is like driving through a tunnel in the mountains in winter, and suddenly everything goes white and it hits you hard. So what’s the big deal with the COVID-19 pandemic? Given that I may be working from home for a temporary amount of time, there’s no telling you just how many distractions there are here. I live by a busy road that runs through my village. We have a filling station opposite us, so I’m constantly hearing the sounds of cars, lorries and buses. It means I can’t study in my living room unless I have my headphones. In the kitchen, the fridge makes a constant humming noise, but to me that noise is like a fire alarm going off. The boiler likes to make a ‘uhh, uhh’ sound with the frequency of a G# note in music, every once in a while as water begins to enter it to be pressurised. Again I could put headphones on, but there’s only so long I can keep them on before I get discomfort with them on my ears and scalp. And of course, sunlight can also cause distractions. In high school and college, I would always ask in every examination room I was put in to have the blinds down for this reason.

Working from home is not as easy as it sounds. It’s too easy to get distracted by other things. I mean, SpongeBob SquarePants episode 35 of season 2 is titled Procrastination. Writing an essay from home sounds like an easy task. With my autism however, this isn’t as easy as it looks. The COVID-19 pandemic is therefore contributing to my distress. The best thing I could probably do is work about 30 minutes with headphones, take a quick break, and then do another 30 minutes. Maybe in the kitchen, because I don’t want to hear cars starting up across the road. I’m not exactly someone who procrastinates. I view it as a cardinal sin of PhD life, so I never do it. And if I did do it, I would probably just be disappointed at myself for not getting enough done. I like to work long hours if I can stay consistent and know what I’m doing. Or if I have a deadline coming up and can fit in the time, I will do as much work as possible within that time period.

Not being able to tell good articles from bad articles

This is actually a big one. Social media itself is something I use a lot. I have Facebook, Twitter, Instagram and YouTube. It is great for when I just want alone time and there’s a fitness video on YouTube to watch. But sometimes it’s hard to tell what articles are actually legitimate and what ones aren’t. For that reason, I have NewsGuard installed as a plugin on my browser. This tells me whether or not an article could be misinformation, or if it is factually correct, or maybe it will tell me if the source is transparent, or has admitted to posting fake news in the past. This is part of the reason I haven’t really posted much about COVID-19. Meanwhile, the daily barrage of news on my social media does make me wonder if I should or not.

It’s definitely okay to be wrong, so long as I hold myself accountable and admit to it. But with a situation as huge as COVID-19 I would feel embarrassed to share or post something that was later found to be wrong. This is because I know these articles are read by thousands and thousands of people all going through the same situation. Wrong information can lead to wrong steps being taken, and possibly escalating an already difficult situation for some. Therefore I stick with what I know on the scientific side of things. I’ve actually tried to keep political posts down. I think right now, my health and wellbeing is more important.

Loneliness

Due to the ongoing COVID-19 pandemic, the UK government has advised us to practice social distancing. Basically this means not attending large scale events, not going to pubs/restaurants, not going to the gym, and other things. This is something I struggle immensely with. I love nothing more than to have company on days where I feel I need it. There are of course days I want to be on my own. But when I ‘crave’ to socialise (as difficult as I find it) I want to share my life with other people. This is already a situation I find myself in. My campus is empty. Every day I go into the office, and walk from the Bus Hub, down to the Logie entrance and into my department, I see no one around. There’s not even anyone I can smile at, or wave at if I know them.

Given this, the correct thing to do is to practice social-distancing. Again for me, this comes back to holding myself accountable. I fully understand that it is better for me to wait before I see friends again, and focus on myself for a while. However, my anxiety comes from the uncertainty behind the situation. How long will this last? Because it could be more than a few weeks. It could be months. There are people going home, back to their home countries or cities. And every person I get to spend time with is a massive gift because I enjoy the company. I’ve struggled with loneliness for quite some time, since coming out of a 4 year relationship.

Uncertainity

And finally, for me at least, it has got to be the uncertainty of the situation. The fact that this pandemic is new, and how unexpected it was to have such an enormous effect, both economically and socially. I like to know what is going on, as much as possible. I love being kept in the loop on things. If I don’t know what is happening, how can I make contingency plans? This ties in with the good and bad articles as well because I don’t want to make the wrong decisions caused by accidental misinformation or misinterpretation. There are people who are not like me, who prefer to take everything as it comes. I have found that it doesn’t work for me. It causes me distress and anxiety. It feels like I do not have control of a situation.

As always, in nearly every situation I find myself in, I am calm. I like to remain calm, and quiet. I used to be the opposite of that, though. And I regret it personally. I have found that being calm and quiet helps me to understand better what may be going on. This is what I look like on the outside, or to people who might not know me. On the inside though, I am battling with mental health. The depression hits, the anxiety caused by the situation. I am doing my best to take care of myself. Home workouts, home cooking, finding other things to do, like reading, or going for a walk somewhere. Maybe this is a chance for me to explore. As long as I have my headphones of course. I wish I had noise cancelling ones, but I don’t as of current. Anyway, that wraps this one up. If you got something out of this, that’s good. I remain optimistic and hopeful, and I am sure there will be another Sonny day just around the corner.

Autism and Hygiene

This is something I’ve been thinking about, particularly as I am abroad in Poland at the moment, and also because of the recent coronavirus outbreak. I feel like the subject of hygiene is often overlooked, whether that is because we are too embarrassed to talk about it, when it is probably one of the most essential parts of being a human. And of course, this is more of a personal reflection on hygiene and not a post telling people with autism to improve their hygiene. But I know that as a child this was something I personally struggled with.

It started because I absolutely hate the feeling and sensation of being wet. I remember sitting in the garden and watching my brothers have water pistol fights in the hot summer days we’d be lucky to get most years. It would take one squirt of water to come into contact with my bare skin and I would scream. The reason is because when water comes into contact with you, it is often colder. The same thing happens when you step into a swimming pool: the water feels cold at first. It would take me around 15 minutes to fully emerge myself if I went to a swimming pool. This of course left me feeling afraid of water and even more so when one day someone decided to dunk me under, just for fun.

So as you can imagine, my hatred of being wet sadly crossed over into my personal hygiene. I would avoid taking baths or showers for as long as possible until my parents would run me a bath and wash my hair by asking me to shut my eyes tight as they poured water over it with a cup. It was also the time in which I’d be trying to stop myself from going into sensory overload due to the temperature of the water, be it cold or hot. Hot water can be really annoying even today. It takes me a while to adjust my shower to the optimum temperature for me. Often this is cooler than when my friends or family take showers. So this meant that they’d have to readjust to their liking after me. I would feel bad about that but at the same time, a comfortable water temperature meant I was not feeling distressed. Even still, I hated taking showers as a kid because I also don’t like falling water. I like to gradually emerge myself in to water and be incredibly vigilant around me as I do so. One slip or trip would have me fully emerged in the water, when I was not used to the temperature, causing me to either scream or grab a huge breath of air.

Just as I hate being slightly touched, I also don’t like the slightest feeling of being wet, especially when I’m wearing comfy clothing. A good way to think about this is with being hugged. Whilst I hate the slightest feeling on my back, I love being warmly embraced. With water it is quite similar. If I know my surroundings, and the optimum way to respond to the sensory stimuli, I am much more easy-going about it. This is also the reason I don’t like theme park rides, especially wet rides. I also don’t like those safari truck rides that purposely get you wet just for fun. That’s their idea of fun. For me, it is my idea of horror. You’re just not prepared or expecting to be hit with a huge splash of water. I see no fun in that at all.

You won’t find me taking dares to go skinny dipping or jump into a cold body of water, just as you won’t see me walking down to the water’s edge at the beach. I am just not comfortable with it. A hot tub can also be tricky to get in to due to the hotter temperature. And even then, to avoid a risk of heat exhaustion I like to only stay in a hot tub for a maximum of 10-15 minutes. I didn’t mind foot pedicures because that was just my feet being emerged, not my whole body. But I’ve also been baptised in cold seawater. Was it fun? No. But it was a very overwhelming and positive experience as a whole. Another reason I don’t really like beach swimming is because I hate sticky sand on my feet as I’m coming up to get dry. It feels super weird trying to wear socks and shoes while you can still feel the slightest bit of sand between your little and fourth toes.

So there’s a little bit of a story for you. What about today? Do I cope with taking showers or baths. Well yes. I’ve learnt that as long as I am in direct control of a situation where water is involved, I am less likely to get sensory overload or a huge amount of anxiety. In my flat, I can control my own shower and bath. I get to decide how long I’m in for. Even though I absolutely hate the cold feeling you always get when you turn a shower off and step out of it, I’ve found a way to control that too. Just using a hot radiator and feeling the warmth of the radiator as I wrap a towel around me fully and rest against it. A very satisfying feeling for me. So to make my showers as nice as possible I always like to be in and out within 5 minutes, and use a shampoo which contains anti dandruff ingredients. I like to make sure that I fully stop dripping before I wrap a towel round me to dry myself off. That way the cold wet feeling in my hair is less and I then don’t have to spend ages frantically rubbing my scalp to dry the strands.

My hygiene has improved because I found a way to control it. Where before I was not in control of my hygiene as of course my parents would be responsible for making sure I’d step into the tub or shower. Cleaning my teeth was always a struggle for me as a kid as well. The taste of mint on toothpaste was not a good sensation for me. As a result I’d often not brush for the maximum 2-3 minutes. After I saw my dentist last year and noticed I needed a filling, oral hygiene for me has improved too. It would absolutely suck when I’d eat crisps for crumbs to stick between my teeth. Why I also won’t eat sticky sweets or toffee. So I stopped eating most of those foods on a daily basis. I prefer foods which do not stick to my teeth. I also like to floss after brushing just to make sure nothing remains. I use the smallest incremental brush due to my tiny gaps.

And then there’s the social pressures felt when it comes to wearing a deodorant or body spray. I prefer Lynx for my deodorant especially for this reason. Lynx is not a roll on, it is an aerosol. I’ll often spray Lynx and wait a while before putting on a top because then I don’t get the cold wet feeling in my armpits as I would if my top was already on. Small things in my routine help to make sure I have optimum but also comfortable personal hygiene.

I also despise having long hair. So whenever it gets to a point where I cannot take it any more, I will go and get it cut, usually at a number three. I hate having a fringe, it just doesn’t look nice on me. And the annoying thing is my hair grows quick so cuts are often every 2 months. I’m also growing out a beard at the moment and it gets annoying when my moustache hairs touch my lips to the point I start to feel it so I often get a beard trim with my hair cut too. Another perk to having short hair is that it dries quicker after a shower. I don’t really like wearing any hair gel or spray. But if I have to dress up for a formal event like a ceilidh, I’ll go the extra mile and get my hair styled how I want it. But with short hair, geling becomes less necessary and I can just go out looking and feeling decent most days.

So there you have it. This is my autistic perspective of my own hygiene and how it has helped shape me into the person I am. Hygiene taught me to have more self control over my life and now I no longer need to hear the words “have you cleaned your teeth” every day. Five words I would absolutely hate hearing as a kid. As an adult though, having control of my own appearance, and character is really helping me feel better about myself and I think that’s really important in this day and age. I hope this helps people understand a bit better about why having a very specific routine is so important for people with autism, and why a disruption or a change in that routine could be the one thing that puts them over the edge.

Stop Using Autism as an Excuse

I want to talk about something important today. Accountability. It’s often a lesson learnt in later life because understanding the value of accountability comes with experience. Whether that’s with friends, family, employers, teachers, supervisors etc. The value of accountability is incredibly important, and I think as someone with autism, it’s vital to understand and apply within our social situations. This is especially because we find social situations challenging, and sometimes we need a bit of guidance in places. However, in order to succeed in a challenging world, a challenging environment you do have to hold yourself accountable to others.

That’s why I think this statement will always ring true and that is:

Stop using autism as an excuse.

I see people doing this a lot, especially when it comes to social situations. I can tell you, I hate confrontation. I hate being confronted by someone, but as I grew up I learned why it’s so important to value that confrontation. So when you’re being penalised for an action you may have carried out, even if it wasn’t intentional, making excuses is a real surefire way to escalate the situation further and cause problems.

And that’s why accountability is so important.

When you know what you’ve said or done is bad, it’s much more difficult to dismiss that accountability.

Take this example. A friend online is having an argument about their relationship with someone. They are upset because your friend has made a mistake (which could be rectified) but instead has responded with something like:

“I’ve told you that I’m autistic, you know this.”

Stop right there for a second. It doesn’t matter if you’re autistic or not. Because autism is an extremely wide spectrum, we all have different challenges and situations we might face. That means some of us respond differently. By saying you’re autistic in this regard, you’re failing to hold yourself accountable for your situation because you’ve neglected to consider that difference. Other people have autism, too. Do they make the same excuse you’re making? The answer is no. And that’s the value of accountability. It is individual, and not generalised.

Now let’s consider this. Someone has brought you into a loud environment. There is music playing and it is drowning out the conversation. You can’t concentrate on listening to what your friend is saying. Another person comes up and asks the first person “Why is he shaking? Why is he acting weird?” Your friend responds by deciding to take you somewhere quieter, away from the loud environment while shouting back to this person “He’s autistic!”

In this case, it’s different. You haven’t made the excuse to not join your friend. But this other person has failed to hold themselves accountable by recognising your difficulty and has instead resorted to asking uncomfortable questions. So while you, yourself haven’t used autism as an excuse, this person has tried to excuse themselves from the upset they’ve caused by failing to consider your autism. This is a much different scenario and if you upset someone who has autism, you should also hold yourself accountable for it. It goes both ways. Don’t make excuses.

When you learn the lesson of accountability you might find it easier to take on challenging situations. We can’t use disabilities as an excuse or purposely allow something like that to hold us back. If you think about it, you wouldn’t want to support someone who makes excuses for their behaviour. So don’t dismiss the value of accountability by excusing yourself from situations you might not like, such as confrontation and penalisation. As autism becomes more and more accepted, we learn to live with it and I firmly believe we shouldn’t allow it to hold us back. Be the person you are. Take pride in it. Your uniqueness, your individuality, your awesomeness.

But hold yourself accountable.

Don’t let autism excuse you from doing things you like, or from doing things that are not right.

Pathological Demand Avoidance

Autism spectrum disorder is not just black and white. There are many shades of grey in between. However there are also other traits associated with autism which may not follow a typical, or standard pattern when it comes to diagnosis. Often, people with autism exhibit common behavioural, sensory and social patterns. Such features include symbolic play, difficulty in understanding social cues, and a sensory profile which can be both hypersensitive and hyposensitive in nature, fluctuating accordingly. Development is often delayed, which leads me into this article. Pathological demand avoidance or PDA for short, is a developmental disorder. More specifically it is a pervasive developmental disorder (PDD) but it is now clinically recognised as being on the autism spectrum (1). It is important to understand that demand avoidance might frequently be common within people who refuse to follow simple orders. But the term pathological is applied to refer to the fact that when a truly pathological degree of demand avoidance is encountered on a long term basis, a diagnosis is more likely to be considered.

Criteria for pathological demand avoidance.

The following criteria is taken from Newson et al (2003). I have removed some language I believe isn’t the best way to describe symptoms and have included personal examples.

1. Passive early history in first year: A person with autism might have a delayed or lack of social response, and empathy. It is important to note empathy here. Recent studies are starting to show that empathy is exhibited within people with autism and should not necessarily be treated as a social deficit (2). I have empathy myself which I express on a daily basis. A personal with PDA however, will often have delayed developmental milestones, and becomes actively passive later. A resistance to normal demands starts to form. A late diagnosis of PDA may result if characteristics develop through adulthood, meaning that even if a child did not have any delayed developmental milestones, they would still experience PDA in later life.
2. Continues to resist and avoid daily demands of life: A person with autism may shut out any pressure, in a non-social manner, but be reluctant in doing so. This might often be done without consideration of other’s needs. They may prefer direct language. A person with PDA might feel this same pressure, but on a constant level. This is such that they devote themselves to actively avoiding this pressure. As a person with PDA develops language, strategies of avoidance become socially manipulative in the following ways. Firstly, by adaptation to that of the adult involved, secondly by acknowledging a demand but excusing oneself, thirdly by physically incapacitating oneself, fourthly, by withdrawal into symbolic play, and finally by reducing meaningful conversation. Examples are provided below:
3. Surface sociability, lack of sense of social identity, pride and shame: A person with autism does not purposefully manipulate and might ask questions or make statements about their interests. In PDA, there is often no identity. A child with PDA won’t identify with children as a category. There is often no sense of responsibility (what may be expected of someone at a certain age), and there is uninhibited behaviour (unprovoked aggression, extreme giggling/inappropriate laughter, kicking/screaming in shop or school). They may not recognise adults as a status despite preferring them to children. Any attempt to punish, reward, or praise is ineffective.
4. Lability of mood, impulsive, led by need to control: A person with autism works to their own rules, making it easier for parents to understand what upsets them and what doesn’t. They do not put on any acts for someone else, and as a result rules, routine and predictability help. A person with PDA may switch actions (such as thumping/cuddling) for lack of obvious reasoning. Moods may switch in response to any pressure (going over the top, protesting, fear, or even affection). Any activity must be on the person’s terms and if at any point the person feels that control is not in their hands, they may instantly switch activities. A personal example I have experienced is having a friend tell me that they do not and have never responded to authority. They may apologise, but reoffend, or deny any obvious wrongdoing.
5. Comfortable in role play and pretending: Other than arranging objects, a person with autism may have a lack of symbolic play and will often look at things realistically. In PDA, a person might appear to lose touch with reality altogether, often using symbolic play as a coping strategy. They might behave authoritatively (like a teacher) to others, and will want to control events or other people. Indirect instruction often helps.
6. Language delay, seems result of passivity: In a person with autism, language might be delayed or deviant, or even non-existent. Facial expression, eye contact, and gestures may not be commonly expressed. A person with PDA has a good degree of catch up, decent eye contact and fair social timing (when not interrupted by avoidance) and as such this may not be considered during an autism diagnosis. Their speech content is different: often discounting demand-avoidant speech. They may ask repetitive questions for distraction, signalling panic.
7. Obsessive behaviour: A person with autism may be obsessive, but less so in the case of social topics. They like order and arrangements. In PDA, much of the behaviour discussed is carried out in an obsessive manner. Low level achievement in school/college may be prevalent due to a high motivation to avoid demands. For instance, a person asked to reference his work may fail to do so, and instead write as originally as possible using their own knowledge. However, their grade will be affected by a lack of credibility and critical evaluation of other work. Other obsessions are more social variant. Blame or harrassment towards others they don’t like, or overpowering in fondness for others, targeting of certain individuals.
8. Neurological involvement: A person with autism shows less comparable involvement in actions such as crawling, and any situation which may go out of control. In a person with PDA, clumsiness is exhibited, along with physical awkwardness (late crawling). Absences, fits, increased excitability, or any episodic dyscontrol is commonplace.

Examples

• Adapting to the adult involved: “Look, I’ve got you something!”
• Demand acknowledgement with excuse: “Sorry, I need to do this first.”
• Physical incapacitation: “I’m too hot/cold.”
• Withdrawal into symbolic play: “My teddy doesn’t like this game.”
• Reduction of meaningful conversation: *bombarding someone with speech*

Discussion:

Pathological demand avoidance is often misdiagnosed or mistaken for other clinical conditions. But research has shown that it is starting to be understood, with appropriate management strategies (1). It has been shown how PDA and autism are similar, but also how different features vary, making it complicated in terms of clinical diagnosis. Where autism management strategies such as routine, order and repetition are helpful, they are ineffective to someone with PDA (3). Thus, important distinctions have to be made within diagnostic criteria in order to provide better support. This article has outlined the underlying characteristics of PDA and provided a comparison to characteristics found in autism.

The reason rewards have been described to be a failure towards someone with PDA is because it relies on compliance (1). Newson’s study showed how his participants behaved in a way that may be seen as humiliating to peers. It also showed how compliance is just another form of control, making it far more unlikely for participants to respond effectively to reward or punishment. To the person with PDA, being asked to do something, with promise of a reward or praise at the end is challenging, because it is still a social situation that is out of their direct control since the person asking the demand gets to decide whether or not compliance or refusal is met with reward or punishment, respectively. Thus, indirect instruction and suggestion may prove to be more effective than direct or authoritative order. In contrast, people with conduct problems are strongly motivated by rewards (4).

There are at least 3 documented aspects that differentiate PDA from autism. Firstly, children with PDA have been described as responding more effectively to unpredictability, humour and spontaneity, which is in contrast to structure and repetition that is associated with autism (5). Secondly, unlike autism, there is a fairly balanced gender distribution in people with PDA (6). And thirdly, fascination and preoccupation of role play, and fantasy, and even difficulty to distinguish between reality and pretence is more characteristic of PDA, whereas people with autism might exhibit delayed or pretend play (7). The differentiating characteristics of PDA from autism make clinical diagnosis more difficult, and also more important.

In summary, while it is important that PDA is recognised as being on the autism spectrum, it is also important to employ different management strategies. Currently, educational or therapeutic practices for people with autism do not seem to suit those described as having PDA. Thus, education in this area to enhance clinical, and general recognition is key. Understanding neurocognitive bases of the pathological demand avoidance profile, and employing relevant, and appropriate strategies, as well as improved assistance and support will be the subject of future research and practice.

References:

(1) Newson, E. L. M. K., Le Marechal, K., & David, C. (2003). Pathological demand avoidance syndrome: a necessary distinction within the pervasive developmental disorders. Archives of Disease in Childhood, 88(7), 595-600.

(2) Nicolaidis, C., Milton, D., Sasson, N. J., Sheppard, E., & Yergeau, M. (2018). An Expert Discussion on Autism and Empathy. Autism in Adulthood, 1(1), 4-11.

(3) O’Nions, E., Viding, E., Greven, C. U., Ronald, A., & Happé, F. (2014). Pathological demand avoidance: exploring the behavioural profile. Autism, 18(5), 538-544.

(4) O’Brien, BS, Frick, PJ (1996) Reward dominance: associations with anxiety, conduct problems, and psychopathy in children. Journal of Abnormal Child Psychology 24: 223–240

(5) Kunce, L, Mesibov, GB (1998) Educational approaches to high-functioning autism and Asperger syndrome. In: Schoepler, E, Mesibov, GB, Kunce, L (eds) Asperger Syndrome or High-Functioning Autism? New York: Plenum Press, pp. 227–261.

(6) Fombonne, E (2003) The prevalence of autism. JAMA 289: 87–89.

(7) Frith, U, Morton, J, Leslie, AM (1991) The cognitive basis of a biological disorder: autism. Trends in Neurosciences 14: 433–438.

Final say:

This is a personal research article I have produced in order to help people with autism, and people without autism to understand the characteristics of pathological demand avoidance, for educational purposes. Some of my own personal examples come from experiencing potential PDA within other individuals, even if there is no clinical diagnosis. As always, every person with autism is different, thus every person with PDA will also be different, but all share different characteristics which differ in terms of a sensory and social profile.